Welcome to American SIDS-Autonomic Dysfunction [AMSAD] Center’s blog. We are a non-profit organization entirely staffed by volunteers whose lives have been impacted by sudden death, SIDS, SIDS-at-risk, and autonomic dysfunction.

Quality Time

December 17, 2008

The experts agree - the best gift to give or to get is what's known as "quality time." But how much time do you have? There are some inexpensive but important things you can do to make sure you and your family have the quality time to give or to spend - at Christmas and throughout the year.

Over 300,000 adult Americans die each year of "sudden death," unexpected, reason unknown or unsuspected. These statistics do not include SIDS babies or older children.

Current research indicates that the most telling indication of high risk for sudden death is autonomic dysfunction, or dysautonomia. The autonomic nervous system controls all of your body’s automatic actions – like breathing, heart beat, temperature control, balance, digestion, blood pressure, blinking. Sometimes sudden cardiac arrest is caused by physical problems with the heart or circulatory system. Sometimes it’s caused by something happening in your brain – the ANS fails. If that’s the case, CPR does not usually do the job. But there are medications that work on the vagal system and can bring you back by stimulating the ANS.

If you know you have a problem with your autonomic nervous system, then you can take steps to avoid death and/or disability. Autonomic dysfunction can be a condition of its own, or it can be the result of another underlying condition or disease process. The symptoms are vague and subtle – and some people have them for years without being aware of what’s going on. Autonomic dysfunction has been linked to many diseases, including chronic fatigue, Parkinson’s, diabetes and others.

Your first line of defense is your family doctor. He or his staff can do some simple, inexpensive tests to screen for dysautonomia. For example, the orthostatic blood pressure test takes about 15 minutes and can be done during a routine office visit, using a regular blood pressure cuff. There are also some vagal [related to the vagus nerve and system] screens. However, most doctors never do the tests. They rely on your reporting of symptoms to guide their diagnostic process – and many of them are familiar with autonomic dysfunction only in connection with mitral valve prolapse. If you don’t recognize the symptoms in yourself or your children, you don’t report, and your doctor doesn’t check. Even if your doctor thinks it’s a waste of time, it’s a good idea to have your whole family checked at least annually, and to learn to recognize the symptoms and report them.

Of course, some people say that only 1 in 100,000 people have the condition and are at risk. Maybe that’s not worth their time, but if you or a family member is that 1, it’s well worth your time and trouble to be screened. Knowing about the risks could be the factor that gives you the power to make sure you are not the 1 who dies suddenly, for a reason unknown or unsuspected.

You’ll find more information at AMSAD Center. Give yourself the gift of quality time – it might be the best Christmas gift you’ve ever given or received.